Balancing BDSM With Chronic Fatigue Syndrome

This week's installment of our dating and sexuality interview series, Love, Actually, is with Chelsea (a pseudonym), 38, a married woman who's had chronic fatigue syndrome (CFS) for 12 years.

In 2004, I got an ear infection. I wasn't too worried about it. I got antibiotics and thought that was it. But soon I found that I couldn't climb the hill to my office, or reach the top of the stairs, without feeling exhausted. Things were difficult for no reason. Eventually, I was diagnosed with chronic fatigue syndrome (CFS).

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It got so bad that I couldn't work at all and ended up housebound with depression. My husband at the time would say things like "Snap out of it," but of course it's not that easy. Medically, there's nothing that can be done; there's no cure. You can take painkillers for the joint pain and antidepressants for mental health, but otherwise, they just tell you to pace yourself. I used to order food to be delivered to my house. I'd put the frozen stuff away, lie down for half an hour, then put away the stuff that need to go in the fridge.

My ex and I wound up getting divorced, and four years ago I met my now husband. He's never known me without CFS, so he doesn't have unrealistic expectations of what I'm capable of. What I can do sexually has been severely impacted by the condition. I don't have much strength in my limbs from a decade of being physically inactive, so we have to be far more careful in bed.

I'd put the frozen stuff away, lie down for half an hour, then put away the stuff that need to go in the fridge.

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This is especially the case because we're kinky; I'm submissive to him, but we don't have a 24/7 dom/sub dynamic [like some couples do]. We couldn't even if we wanted to because of my health.

We have to communicate very carefully about our BDSM play. He can spank me one day and it'll be absolutely fine, but the next day the same type of spanking may be overwhelming. There have been times we've had to stop what we're doing because it's too much for me. Even if we have what we consider vanilla sex, he puts a pillow in front of my face when I orgasm to block the light, because the light is too much sensation.

One of the big realizations for me in recent years has been that orgasm is not an end point. Before him, I hadn't been very adventurous in my sex life, so sex for me had always meant penis in vagina with an orgasm at the end. Coming to the realization sex is the journey rather than the end has meant I've been able to give up on working toward that singular thing.

For my husband, orgasm is much more the point, but we've found ways where he gets that satisfaction and if it doesn't happen for me, I don't actually need to. Sometimes he will hold me down and basically straddle me and come on my breasts. He will build that into a scene so that it works for us both without me having to say, "I'm not physically up to it today." Instead, he'll say, "I'm going to do this thing to you," which pushes buttons for me. It's a way we've adapted our dominant/submissive play to account for my health. The idea of him holding me down and doing these things is enough of a turn-on in itself.

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There'll be some days my head is going, "Yeah, let's do it, let's do it," and my body is going, "Fuck off."

CFS impacts my masturbation as well. I have my go-to fantasies, the things that never let me down, but there are days where nothing quite gels. I want to come but my body won't do it, and that's when it gets super frustrating. I never had that experience before CFS; it's very much related to my health.

I don't feel deprived when it comes to sex, even though of course it can be aggravating. Mentally, it's very challenging; there'll be some days my head is going, "Yeah, let's do it, let's do it," and my body is going, "Fuck off." That's frustrating for my husband as well. There are days where he just wants to have sex, and at first I'm totally into it but then have to say, "Sorry, I've changed my mind." He respects and understands that and works around it.

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I have a husband who tells me how amazing and sexy I am every day, even though I'm 30 pounds heavier than when we got together. He totally accepts me, and from that I've learned to accept myself. I'm more connected to myself as a human being and accept that I'm not going to be perfect. I'm very happy with what we do.

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